Monday, March 19, 2007

Autism Is a Disorder, Not Just a Different Order

Denial is one of the first problems encountered by parents of newly diagnosed autistic children. The challenge of facing up to the reality of an autism diagnosis for your child is huge. Once a parent gets past the denial stage they must deal with helping their child to the fullest extent possible. There is no doubt amongst those who seriously seek improvement in the abilities of their autistic children to live a full and happy life that intensive early intervention is absolutely necessary. Nor is there any serious doubt that behavioral intervention is the only evidence based intervention currently available to help your child. But for the parent starting out on that effort you will receive some misleading signals from advocates of the "neurodiversity" movement. Although much of the rhetoric emanating from the neurodiveristy direction is confused and contradictory, in its essence neurodiversity states that "autism is not a disorder, just a different order" to use the words of a high functioning autistic person who called into a CBC radio talk show on the subject of autism.

The neurodiversity movement, if it presented the positive attributes of people who happen to be autistic, or presented the whole picture of autistic persons on all points of the spectrum, could be a positive force for bettering the lives of autistic persons. But it does not do these things. What the neurodiversity movement tries to do, at its heart, is convince the world that autism is not a disorder. Part of this effort involves demonizing anyone who describes some of the unpleasant truths associated with some cases of autism. This occurs when such unpleasant topics as feces smearing, self aggression or other acts of violence are discussed realistically by parents such as the courageous parents of the Autism Every Day video.

We have experienced these unpleasant truths in our household. Our autistic son, Conor, is a joy, a blessing. The numerous posts on this blog site about Conor present the joyful element of our son. But the reality is that he also can become aggressive, pulling on his mother's hair suddenly or biting. These are truths, unpleasant truths but truths nonetheless. Our furniture is largely in shambles with legs broken off chairs, mirrors shattered, cabinet and closet doors unhinged, keys removed from computer keyboards. I have experienced an arm coming suddenly around my neck from behind while driving the family car.

Describing such truths is not dehumanizing our son as the neurodiversity authors, would have you believe. It is speaking the truth and describing the facts as they are not as we would wish them to be. It is not a violation of Conor's human rights to describe him, and his autism disorder, in honest realistic terms. To the contrary, it would be a gross violation of his human rights to disregard the challenges he confronts by virtue of being autistic and failing to take steps to remedy those challenges using interventions judged effective based on the best available evidence.

The neurodiversity movement is proud of those high functioning autistic persons who can write lengthy articles on internet sites, speak to courts and legislatures, and make interesting interesting internet videos. It also likes to embrace and diagnose as autistic historical figures of great intelligence such as Albert Einstein. But the neurodiversity, autism acceptance, movement does not like to talk about lower functioning autistic persons or the very real challenges faced by families who actually care for and live with lower functioning persons. Worse that that, as the Autism Every Day parents, and a host of other parents trying to help their autistic children have discovered, they do not want anyone else to talk about these realities either.

The neurodiversity movement does not represent the views of all autistic persons. It represents the views of SOME autistic persons, some, not all, high functioning autistic persons. These individuals, and the handful of misguided professionals who adopt their point of view, would have you believe that there are no low functioning autistic persons, that it is wrong to even use such terms as high functioning or low functioning. They do not want to acknowledge that some autistic persons are intellectually impaired. They do not want to talk about the autistic persons who actually live in institutions around the world in less than pleasant conditions, including here in New Brunswick Canada.

At its heart neurodiversity is an internet movement based on a group of people who share in common a diagnosis of a medical disorder - autism - but who refuse to accept that autism is a disorder. Neurodiversity is for this reason inherently a contradiction but one that can be very misleading in the view of autism that it presents to the world.

The DSM-IV diagnostic criteria:

# A total of Six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3).

1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to development level
3. a lack of spontaneous seeking to share enjoyment, interest, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity

2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alterative modes of communication such as gesture or mine)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotypes and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

# Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

# The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

Autism is a different order but it is also very much a disorder. The DSM-IV says so. My life experience with my profoundly autistic 11 year old son confirms for me that fundamental truth.


Anonymous said...

Autism is a disorder. Yes, I have one that's one day going to be "normal" and if I never told him that he's got NVLD (w/ S/l delay = Mild pdd) he'd never know. He's my high behavioural one.

I have one with severe PDD that in many, many ways is high "functioning" that others with that dx. The communication breakdown gives us that ranking on the scale. Behaviourally, he's "normal" except for a little hangwringing and vocal noise.

EVERY child, EVERY adult is different. Some cope easier than others, some unfortunately never manage to. But all of a sudden trying to change it into a "way of life" and ignore the excessive behaviours... does a disservice to those that wish to learn those coping skills and those that cannot.

But I am sick and tired of being told by THERAPISTS to ignore the behaviour. Why is there not programs to teach appropriate social behaviour??? I my eldest in a private speech camp and FINALLY someone helped with appropriate social behaviour. But it still isn't enough, he needs more.


Anonymous said...

gosh, I thought the neurodiversity folks were really proud of Alex Bain. He's not speaking in court or writing a blog, but he is doing really cool things, and when he was your son's age he was less mature than he is now. Imagine that. Lots of the neurodiversity blogger folks have children who have had your child's problems, though maybe they have been less stressed by parents who pressure them, hard to say. Less stressed kids are less likely to break furniture, that's what I have found.

Unknown said...

Good cheap shot Anonymous 3:30 pm. Bettleheim would have been proud of you.

Unfortunately children with severe autism need more to help them then cheap shots by anonymous internet posters.